Friday, November 8, 2013

Heart catheter was 5 hours late, but worth the wait...

I'm soooo tired, I can hardly see straight, but I have to share with you (our sweet Village) the fruit of everyone's prayers...

Grace's heart catheter was scheduled for 11:00 am, but didn't actually take place until 5 hours later...  It was worth the wait because it confirmed that her left ventricular function is good!!!  Please stop and do a little dance of praise with me...  go ahead, I'll wait....  :-).  The heart catheter also confirmed that she has severe mitral regurgitation, so replacing the valve should cause all of the craziness in her  sweet little heart to subside (crazy high pressure in the right side of her heart, tricuspid regurgitation, high lung pressure, etc).  Don't get me wrong, a valve replacement isn't a trip to "candy land," there is still a lot of risk associated, but we are celebrating the hope of life...  life abundantly, not a checkmate (Lord willing of course :-)!

PRAISES...
-David texted me this morning and said her chest x-ray looked "wonderful"...  did you hear that, someone said the word "wonderful" when talking about Grace's lungs (I even confirmed that that was the word the Dr's used, not David's interpretation :-)!!!  Time for another dance of praise...  She is still on a lot of diuretics, but we are celebrating that they were able to get her lungs close to clear.
-Confirmation of good left ventricular function!!!
-Grace got her dreads...  I mean her hair washed and brushed this morning!
-Grace is the toughest cookie we know!  The nurse confirmed that most kids can't handle the state that her heart is in right now, but Grace continues to fight on and make severe mitral regurgitation look precious (in God's strength of course :-).
-Dr. Marx (in all of his sweetness) reiterated to David multiple times that we made a great, well educated decision by bringing Grace to Boston for the bivent repair.  He went on to clarify, "not because I am biased or anything like that, but because it gives Grace the best long term prognosis."

PRAYER REQUESTS...
-Grace might not be extubated like we thought, due to the fact that she will just have to be reintubated for surgery. In addition, her mitral valve is severely leaking, so the attending said that it is common for the lungs to need that pressure support until the valve is replaced.  Therefore, please pray for no infections from being intubated for such a long period of time. 
-Wisdom for her Dr's as it relates to choosing the best valve for Gracie Doo.  We still don't have a surgery date, please pray that we get one in enough time for me to be able to make it out there.
-Preparation for Abby and Andrew's hearts, as I will have to talk to them about potentially going to Boston soon.


4 comments:

Tricia Keierleber said...

Praying and so thrilled with the good news! Certainly not candyland, but it's a positive "easier" fix than the terror TCH painted!

Rejoicing over the good news and praying this "easy" fix does the trick!!!

Unknown said...

I check this blog about every two hours every single day and was so relieved to read this beautiful update. You are, indeed, very wise and wonderful parents. Now that my sister, Jane, and my niece, Kate, have had the opportunity to actually meet Grace and, thus, know first hand what a charismatic and beautiful child she is, I feel that we are even more connected to her. Your entire family is always in my prayers.

Ashleigh said...

Sending lots of prayers up from Alabama!!

Unknown said...

Just found your story through the Foley Fam and my heart hurts for you. Many prayers your way!